Autism & Diagnosis

When Finian was 3, he was diagnosed with Autism as described by the Diagnostic and Statistical Manual of Mental Disorders (DSM).   

The diagnosis wasn't a big surprise; he had been lining up his toys and eating firelighters since he could move.  He was (initially) non-verbal.  Intense sensory issues caused him to disintegrate into hysterical meltdowns.  He rarely slept.  Pica meant that he had to be perpetually supervised to stop him eating dirt, paper and plastic.  When he took to his feet, bolting became a preoccupying hazard. I had been pushing for assessment for 2 years.  By the time we out-ruled a slew of genetic, metabolic and developmental disorders, Autism was the obvious last card on the table.  The diagnosis arrived with sad inevitability rather than appalling shock.

I did what most parents do, and became a diligent student of all things neurodivergent.  There wasn't a book left unread, or a therapy left unconsidered, including a fierce study of the clinical criteria necessary to diagnose Autism.  I devoured the DSM.  It was populated with deficits (in communication and social interactions), functional limitations, and categories of restrictive, repetitive behaviours.  These were measured on score charts by well-intentioned professionals.  In slow-motion horror movie style, I realised that accessing the services my son required depended on him being reduced to a set of deficits.

But, search as I might, I could not find my lovely, spontaneous, unguarded boy in the language of insufficiency used by the DSM.  

I'm pragmatic about Finian's needs; I recognise that he has requirements that are reluctantly met by an ableist world.  I understand that we need to identify the areas that autistic people struggle with to attempt to help them.  Measuring the 'deficiencies' of autistic people is an expedient way to plan services.  It is all too clear, however, that service planning consistently fails our kids, so the price of prudently labelling our kids as 'less-than' and 'other' is a false economy.  

Sometimes I indulge in a dangerous fantasy. Imagine living in a world where the lens was reversed, and we focussed on changing the wrongness of our society rather than the wrongness of our children.  I know it's not going to be realised in my lifetime, or probably Finian's, but I'm cursed with optimism that, in time, the world will learn to value difference.  

Autism & Triggers

Sometimes, in case I'm falling asleep at the Autism wheel, Finian reminds me of his neurodivergence by having a meltdown.  It's a loud memo he sends me now and again to keep my spectrum senses sharp.  Nobody needs as complacent Autism Mammy.

A meltdown is different to a tantrum.  

In a tantrum, the person has one eye on the observer to check the effectiveness of their theatrics.  In a meltdown, the person is so overwhelmed that they..... well...... melt down; they don't need, or even notice, an audience.  Tantrums have purpose; meltdowns are an involuntary response to sensory overload.  A meltdown is not about being belligerent, manipulative or obstructive.  It's about being so fraught with unprocessed experiences and emotions that they erupt with apparently random violence.  They're exhausting, scary and not fun for anybody.

Emotional regulation is tricky at the best of times, but throw Autism into the mix, and maybe some excessive social demands, and it doesn't take long for the perfect storm to be whipped up.

The trouble autism parents have is that we don't always see them coming.  

On a good day, we notice escalating behaviours in our kids.  This gives us a chance to make environmental changes, or introduce calming practices, to minimise the distress.  

On a bad day, a meltdown bitchslaps us with the subtlety of a wet haddock.  

Neurotypicals can usually identify their triggers fairly easily.  We (mostly) have skills to help us manage dysregulated emotions.  It's not always so clear for those on the spectrum. It can take hours, or even days, for an experience to be processed as an emotional response.  This is what happened Finian two days ago.

At the weekend, Finian had a meltdown that'd make the love child of Elton John and Mariah Carey blush.  I didn't see it coming.

On the surface, it seemed to abruptly detonate without warning; one minute he was pottering about scripting Angelina Ballerina..... the next he was screaming into the void, flinging himself around our home with ferocity.  It lasted a couple of hours.  I dealt with it by meeting his heights of fury with depths of calm.  Co-regulation, the willingness to quietly sit in the storm with our kids, is best practice.  It always passes in the end.  

Often, I'm unable to pinpoint the trigger to Finian's meltdowns.  This time, though, I eventually figured it out.

Earlier that day we went out for a walk, followed by the promise of a kiddie ride in a local shopping centre.  I hadn't factored in that the shopping centres were closed because it was Easter Sunday.  The kiddie ride didn't happen.  Finian was disappointed, we had chats and a cuddle, and I forgot about it within ten minutes.  About six hours later, Finian remembered.  His experience of the world being unpredictable, unsafe and abandoning was too much to express in limited words, so they found release in a screaming, self-harming cacophony of raw awfulness.  

If we listen properly to our Autistic loved ones, the triggers to their emotional pain hide in plain sight.  In hindsight, Finian had been chatting about locked cars;  if I had been listening well, I would have spotted the metaphor for powerlessness and being denied access to something.

This isn't about self reproach; it's about being willing to learn.  If our kids are a cryptic crossword, it makes sense to pay attention to the symbols and metaphors they communicate in.  

Triggers are not something to fear, but should be recognised as welcome signs of rough winds approaching.  Paying close attention gives us a little ability to contain the incoming storm.  Whether typical or divergent, challenges to our world expectations are deeply triggering; noticing and working with them makes a lot of sense in this crazy world. 

Autism & The Cute Quotient

I'm not entirely sure when Autism stopped being cute.

Back in the day, Finian was met with indulgent smiles when he flung himself into the arms of strangers.  He was chubby and cuddly and loudly generous with hugs.  His disregard for boundaries disarmed the most defended of people.  He took Cute, blended it with feral vitality, and unleashed his own irresistible brand of Lovable onto the world. There was no-one he couldn't charm.

Then, in the space of a few disorientating months, he sprouted body hair and grew 3 feet taller.  

The once compact, rosy-cheeked, ankle-biter scaled up into a man-sized Jitterbug, composed mostly of knees and elbows.  

He began to scare people.

Ngl, it was kinda a shock.  

I'm a card-carrying Irish mammy.  I am blessed with the unshakeable knowledge that I have given birth to the Most Beautiful Children Who Have Ever Existed....... but even I can see that Finian is at risk of becoming known for all the wrong reasons.  My son's deceptively adult body is governed by a banana republic with a drunk toddler managing the war cabinet ..... but all this limited world can perceive is an alarming eccentric with little regard for social convention.

It's my job to keep him as safe as I can in a world not designed for the neurodivergent.

There's nothing about this in the DSM.  There's no graduation ceremony, graph or flow chart to give us a heads-up.  We don't receive slices of cake, or HSE memos, or milestone reminders, indicating that the Delightful Quotient has degraded from Enchanting AF into Social Menace territory.

Special needs parents have to figure things out for themselves.  We have to be clear-eyed about what can make our kids lives difficult, and be creative with how we circumvent future hardship.

Finian is an unpredictable pre-schooler inhabiting the body of a nineteen year old man.  My task is to be his tree in the storm;  I need to have strong roots anchored deep in safe earth, with flexible branches that bend with the wind.  Because I enjoy a stretchy metaphor so much, I also need to be the leaves that evolve with seasons and create beauty out of air and earth.  No small task.

Flexibility, the willingness to embrace change, is central to the wellbeing of our special needs kids.  When we bend, we won't break.

Autism & Nose Bleeds

I decide to have an early night.

I relax into my quiet bed with word games and herbal tea.  I feel terribly grown up.  Perhaps this is what it means to be a normal, functional adult?

I am almost asleep.

Finian thunders across the landing with the grace of an outraged wildebeest.

"It is bleeding" he announces.

His words are made redundant by the red soup smeared across his face and pyjamas.

Nosebleeds are a thing for him, a gift he has inherited from me along with Raynaud's and a love of sparkly things.  I am nothing if not generous in sharing my most interesting genes.

I take him to his bedroom. In the absence of tissues, it seems Finian has used the walls to wipe his nose.  It resembles a 1970s horror movie abattoir, where possessed workers enthusiastically paint the room with pig innards.  I briefly wonder if I could sell it to a gallery.

I sigh.

I feel bullied by genetics and bad movie sets.

He is a little distressed, but he knows the drill; pinch his nose, lean forward, wait for it to stop.

It does not stop.

My fingers hurt from compressing the bridge of his nose.

Long minutes pass.

Finian's bedroom walls and ceiling are crammed with art he has made over the years.  I have plenty of time to look at them.  Pammy Panda and Bob the Builder feature heavily.  I rub his back and hand him fresh tissues.

Inexplicably, one of the pictures falls from the ceiling.

Finian can cope with the bleeding, but disobedient art proves to be a bridge too far.

He loses his shit.

He leapfrogs around the room clutching the offending picture, spray-painting the room red with gay abandon.

"Fix the picture" he screams.

"First we fix your nose, then we fix the picture."

"FIX THE PICTURE!!!!!!!"

I accept we may be the playthings of the gods, but I am not pleased with being blindsided by this level of fuckery.

I invite them to perform illegal sexual acts with their mothers.  I suggest they roast their genitals in the fiery pits of hell.  I direct them to assume unlikely yoga poses involving positioning their heads in surprising body cavities.

The gods don't care.  They roll their dice and laugh.

I decide that this is not the time to reason with my son.  It is clear it would not be helpful to point out that if he bleeds to death, he won't care where the picture of Pammy Panda is located.  I consider suggesting he securely locate Pammy Panda in a place visited only by proctologists and the unholy.

I call my husband instead.

"Can you find some blue tack please?"

There is no blue tack.

James gets ice to try to stem the bleeding.

It does not stem the bleeding.

We take turns pinching his nose and replacing bloody tissues.  Finian is most vocal in prioritising art over imminent death.  We brainstorm how to reattach the picture.

My haemorrhaging son is flanked by two nurses, and we are all more concerned with re-hanging a picture than hypovolaemic shock.

The bleeding finally slows.

James goes in search of something adhesive. His misspent youth being amazed by the A Team does not go wasted.  He returns with band aids.  The picture is replaced, and my dripping son is less screamy.

"The pyjamas are splashed" observes Finian, now that world order, and art, has been restored.

The pyjamas are indeed splashed.

The once-grey sleepwear, now tie-dyed in body fluids, resemble something the Charles Manson clean-up crew may have worn.  I doubt soaking in salt and cold water will save them.  I worry that the bin men might suspect we indulge in a little light genocide at the weekends. 

Eventually, the bleeding stops, pyjamas are changed and evidence of massacre is cleaned up.

I return to bed.  Early nights are inadvisable.

Autism & 'Autistic Privilege"

I have a question.

How do we tell if our kid is being autistic, or just being a massive miscreant freshly ejected from the bowels of hell?

I have always been taught that there's no such thing as "bad" behaviour, and that beneath each behaviour is a need.  However, there is a world of difference between the rarefied air of a sober classroom, and the fluorescent jungle of aisle three in Lidl.

When Finian morphs into a purple incubus because I won't allow him an extra treat, I have to question the wisdom of psychologists.  I wonder how often do they actually take autistic kids shopping?

I still can't tell if Finian's behaviour is signposting a need for safe boundaries, sensory regulation or just a signal that he (very loudly) wants more crisps.

There must be a line between our kids acting out of autistic overload, or out of opportunistic delinquency.

While Finian was at youth club yesterday, my friend Tara and I tried to figure out where this line may be located.    

We didn't get too far with a definition, apart from concluding that sometimes our kids (much as we love them) make rabid honey badgers seem agreeable by comparison.  The 'line' seems to be more of a mercurial, moody suggestion than an actual point of reference.

In Tara's house, the term "autistic privilege"  is used by her neurotypical kids (along with much eye rolling) when their  brother gets off the hook for doing something "autistic".  It's my new favourite phrase.  

Tbf, life is generally not kind to those on the spectrum, so maybe when they get the opportunity to play the autism card, they should do so without consequence.....

..... not that Finian's conscience will ever be troubled by chancing his arm in the supermarket.

"I wanted Tayto, not boundaries"

Autism & Trolls

 The autism veterans among us use a mantra that saves us much time, energy and ophthalmic health.  

Ophthalmic health, because the well-being of our eyes is challenged hard.  

First, we cry lots.  Second, we don't sleep much.  Third, our eyes roll in their sockets like incredulous dynamos at the bullshit we have to see through.  

The mantra is, don't feed the trolls.

Trolls, we quickly learned, do not only lurk under wooden bridges and traumatise goats (for those of you who didn't grow up with Ladybird books, this is a Billy Goats Gruff reference).  Trolls live among us, masquerading as normal people, sometimes appearing curiously human.  However, when exposed to the intoxicating power of a keyboard, it doesn't take long for their inner swamp-monster to emerge.

The weird thing is that it's often those within our own tribe who attack us.  The scourge of special needs parents are often other special needs parents with spleen to vent and inferiority complexes to inflate.

They are also the people who wouldn't say "boo!" to you if they met you in person.  Keyboard warriors are generally cowards in reality.

Earlier this week my friend Emma pointed out (on a supposed support network) that she doesn't feel safe to explain how ABA (applied behavioural analysis) benefits her kids.  This is a therapy many of us use with positive effect to keep our kids, and us, safe and well.  However, some people really don't like ABA; it is singular in it's ability to summon screechy hell-demons.  Trolls become VERY animated at the mere mention of it, and accuse anyone who uses it of being child-abusing satanists.  

Instead of scrolling past it like normal people.  

Adult, reasoned discussions are firebombed by right-on, self-righteous high-horsiness.  Constructive, useful discourse is a bust.

Emma also highlighted the insanity of being anxious about what words we can use to describe our kids (autistic? have autism? mad as a box of coked-up frogs?).  I may have added the frog bit, but there's a lot of eggshell-avoiding in an attempt to not upset someone's delicate sensibilities.  

What the actual fuck?

Anyway, she was flayed alive, roasted, salted and then devoured for speaking about her lived experience.

On a support platform.

The effect is that most of us long-term SN parents avoid social media groups, because we end up giving oxygen to the hot air of trolls.

We can't reason with crazy, but we can roll our eyes at it and refuse to feed it.

Autism & Name-Calling

I finally did it.

I crossed the threshold from being occasionally distracted to living in the twilight realm of pleasant confusion.  

I called Finian "Milo".

Milo is the dog.

It's a fine line I managed to stay the right side of for an admirable stretch.  I suppose I should be grateful that I realised I did it.  And that Finian didn't respond to it.

Silver linings, and all that.

Tbf, Finian and Milo have a lot in common.  They both chew the furniture, howl at invisible phantoms and have, on occasion, used the kitchen floor as a toilet bowl.  Easy mistake, really.

I can't blame overwhelming stress for my lapse, either.

As a family, we're cruising through relatively smooth waters, and relishing every minute of it.

Finian is thriving in his adult day services.  He loves hanging with his  friends at his Saturday youth club.  Our older adult 'kids' are painting their own worlds with evolving palettes.  

On a professional level, I'm in the messy process of setting up my own counselling business.  This is fun, if you consider skewering your eyeballs with toothpicks fun.  I comfortably hold space for clients as they grow through the dark recesses of their souls;  however, swallowing the alien language of sole trading, revenue and marketing is like drinking bleach.  I'd prefer to rote learn Ulysses in ancient Aramaic. My resistance has resistance.  But, still, this is not the source of my mis-dropping of names.

Maybe this pleasant confusion is peace?  

It's nice to lean into it without waiting for the other shoe to drop.  Maybe I'm relaxed enough to allow things be as they are? 

To breathe into this life, without pushing, grasping or resisting, accepting the tornados and sinkholes as part of the rich tapestry, is a nice place to be.  When people talk about the search for their 'authentic self', this is where it lives.

Surrendering the weight of trying to force life to be other than it is, is deeply wholesome (if unfamiliar).  Confusing my son with the dog is a pretty stitch in the comfortably bewildered embroidery. 

Autism & Growth

It's fair to say that growth is spiral, not linear.  The old two-steps-forward-one-step-back dance is a foxtrot most of us are familiar with.

I can say with certainty that my own growth is not as smooth as I'd like.  This morning I opened my laptop in Costa to do some very self-actualised studying.  I was feeling terribly grown-up.  Then I balanced the karmic scales by spilling my entire mug of tea over the table before I even sat down.

I didn't even blush.  This is who I am.

My inner toddler enjoys a good tussle with my outer adult.

Everything in the universe strives towards equilibrium, my dignity included.

Prior to this I met a dear friend for coffee (which obediently remained in its mug).  Our sons spend a lot of time together in their adult day service, and we noticed that they're positively influencing each other's progress.   The lads are kinda curious about what the other is engaged in and sometimes they join in together.  It's a joy to see them vibe off each other and enjoy each other's company.  This is a developmental stage lots of autistic people never hit.  It fills me with optimism about how they may evolve over the coming years.

I told my friend about a developmental leap I only noticed in Finian this week. 

Twice this week he purposely took his phone to me with the intention of us watching one of his favourite cartoons together.  Joint play/enjoyment is a milestone neurotypical kids tend to reach at about age 2. This is built on the joint attention stage (usually about 9 months) where babies point to something they like and want the caregiver to look at it too.  To my knowledge, Finian hadn't reached that yet.

Now at the age of 18, he's hanging out with his friend and sharing moments of joy with me.

Our kids will always progress, in their own time and in their own way.  It is a goal of mine to move towards being my authentic self in the same manner, without forcing it or denying it.  

Years ago, a friend told me that our kids have a developmental delay, not a full-stop.  We just had to put aside our expectations and accept them for who, and where, they are.  She was bang on the money.  This is the idea of takiwatanga, which I wrote about a while ago.

There is always joy and hope with our special needs kids, made all the sweeter by the pure authenticity that comes with it. 

Autism & The Myth of Independence

I knew this morning was going to be busy.  

This should have worried me.  When I'm busy, I'm the sort of person who falls going upstairs, stabs myself with my own bra and forgets what I'm saying mid-sentence.  

Despite this, I remain an optimistic idiot.  I'm like a human golden retriever, only with half as much legs, marginally better breath, and about the same amount of hair.

My Busy Morning unfolded as expected.

First, my own saliva tried to murder me by going down the wrong way.   This is not the sexiest way to expire.  I'd like to imagine I'll die of a fabulous Victorian wasting disease, or from eating too much Belgian chocolate off Brad Pitt's belly.  Choking on my own spit was never on my Sexy Death list.  Not a cool start to my day.

I survived this near-death experience, but immediately kinda wished I hadn't; the heel of my favourite boots broke.  

Whoever wrote The Book of Revelations neglected to mention the real reason the horsemen of the apocalypse were in such a bad mood; those headless bad-boys woke up one day to engage in some light-hearted hellraising, but discovered they had knackered shoes.  This pushed them over the edge from being a little bit grumpy to unleashing war and pestilence upon all humankind.  

I totally get this. 

Bad shoes and Armageddon make obvious bedfellows.  They certainly did in my hallway this morning.

Finally, I caught my hair in the car door.  This trick required a dextrous combination of skill and timing, so I'm actually more than a little proud of pulling this one off.  Yeah my scalp hurt, but it's nice to know I could cut it as a circus act if the whole wife and mother gig doesn't work out.

If anyone had been watching other than Finian, I might have been a little embarrassed. He was utterly unmoved by my lapses from grace, though.  His need to be accepted by the crowd reposes peacefully in a dreamy, distant landfill.

I envied his utter lack of concern with appearing cool.  He didn't feel harassed by the urge to fit in.  I briefly felt jealous of his independence.

Even though I'm quick to trip across my own knickers, I'm slow to process ideas.  The notion of independence, and what it really means, stewed slowly beneath my busyness.  As the day wore on, I began to question the degree of nobility we ascribe to being independent.

Really, the whole notion of independence is kinda crap.  

Independence is a fake aspiration created by capitalism and the breakdown of our natural, tribal co-existence. 

It's sold hard by the western culture.  We are applauded for not needing anyone, for being utterly self-reliant and for disdaining inter-dependence.  

We have been told for decades, maybe centuries, that we want it..... so like good little consumers we believe we want it.

The truth is the we do need each other, though.  We are pack animals, and attempting to live as independent entities is making us sick, personally and collectively.  Independence is a myth we buy into.

Unless you're Finian, that is, and independence means not being embarrassed by a mother who farts when she sneezes.  

It seems independence is a subjective notion.  I hope they never let me write a book about it.

"we shoulda got Jimmy Choo's"

Autism & Crime

I recently discovered that Finian is moonlighting as a thief.  

Not content with careering through this world as a fickle tornado and champion Perplexer of Parents, he has decided to level up to a life of crime.

This would upset most parents.

I see it differently, though.

I think some light tea-leafing makes a colourful addition to the skills section of his CV.  A bit of opportunistic robbery vibes quite nicely with his ability to crack PIN numbers and passwords.

My son is a master criminal.

I missed all the clues.

He had taken to loitering around the washing machine.  I later realised this was to check for loose change in the drum.

Odd coins I left on window ledges and shelves mysteriously disappeared.

His wallet, which normally only contains his revolut card, was growing unexpectedly bulky.

It was time to ask some searching questions.

"Finian, can I see your wallet please?"

The Accused removes his wallet from his pocket.  He turns his back to me and opens it. He carefully removes items which sound suspiciously coiny.  His shoulders tense momentarily, as if testing the weight of his conscience.  Long seconds tick by.  His shoulders soften. He appears to have resolved his Long Dark Midnight of the Soul.  He returns the strangely jingly material to his wallet.

He turns around to face me.

"No" he says.

Clearly, the Defendant is unburdened by a heavy conscience.

"Do you have money in your wallet, Finian?"

"Yes".  His admission of guilt is coupled with a massive shit-eating grin.  I doubt he is troubled by remorse.

"What do you want it for?"

"I will put six coins in the Bob kiddie ride"

"You only need to put one coin in"

"I will put six coins in"

"Those coins don't belong to you.  Give them back to me"

"No"

"Six coins might break the kiddie ride"

"I will put six coins in the Bob kiddie ride"

I briefly consider forcibly confiscating the wallet, but the requirement to fish about in the Defendant's jeans pocket is not singing to my soul.  There is a very real risk I will retrieve money and a surprise fungal infection.

As Judge, Jury & Executioner I surmise that in the Great Scheme of Things, this is a battle not worth fighting.

Plus I want to watch Modern Family and I can't be arsed with a row.

Dismissed.  Tired parent rests her case.

So my bandit son remains at large, and I've learned to be more careful with my spare change. 

My career as a law enforcer may be less than stellar, but I have learned that Bob kiddie rides can handle six coins with ease.

Autism & Art

When I was a kid, I didn't understand adults.  My mother used cryptic phrases like "you little article" and "I'll put that smile on the other side of your face".  She said this while doing mad stuff like laundry and buying food.  

Adults were bananas.  And bought bananas.

I had no idea what their weird language meant.  It became my life's ambition to become one so I could understand them.

Then my dream came true.

Hate tha'

I just spent the day cleaning a house that resembled a crack den trashed by angry badgers.  

Now an enlightened adult, the smile is very much on the other side of my face.  

When you think about it, babies are  smart.  They very vocally protest the whole being-born business.  They barrel into this world screaming and covered in shit.  This is a really observant predictor of what's to come.

Being a grown-up kinda sucks. 

But, in between the whole birth and death thing, there IS fun to be had.

Finian was always averse to art.  It was way too messy and sensory for him.  In his final year at Abacas, though, an innovative art therapist helped coax out a hidden love he has for it.  This has become a really fun medium for him to express himself through (all the more valuable for someone who struggles with language processing). 

I also didn't believe I could paint until I was introduced/bullied into it by a dear friend (she's called Dani and I'll pm you her credit card details for a small fee).

I was right, btw.  

I can't paint.  

But I'm having so much fun can't-painting, and am creating weird messes on canvas that delight the bold child in me.

There's only one consonant separating 'autistic' from 'artistic'.  I suspect there's a bunch of gods somewhere having a great laugh about this.

Autism & Takiwatanga

Native Maoris don't recognise autism as a disability.  This 'primitive' culture were rocking neurodivergence long before white people arrived with a welcome gift of smallpox and genocide.  

Indigenous embrace of those with special needs is so pure that they don't have a word in their vocabulary for disability.  

The closest phrase they have of a definition of autism is "takiwatanga", meaning "his or her own time and space".  

What a beautiful phrase to taste and roll around your mouth.  

His or her own time and space.

Imagine if we enjoyed this flavour of autism, instead of wishing to change it, break it or spit it out?

In this insane corner of the 'civilised' world we value speed, productivity, material wealth, aggressive acquisition and perpetually anaesthetising 'entertainment'.  

We are rewarded for running on empty, using a burnt-out engine imposed on us by a toxic culture.

The notion of sitting quietly with ourselves is so alien that it fills us with terror.  Most of us have never met our true selves.

In my work as a counsellor, one of the first exercises I invite my clients to try is to practice five minutes a day of sitting in stillness.  Most struggle hugely with it.

In the west, we sleepwalk through our lives at lightening speed.

It's no wonder we frame autism as a set of infuriating deficits.

So, I caught myself feeling impatient with Finian yesterday.  

He is a handsome, able-bodied young man but I have to help him have a shower.  I found myself rolling my eyes as I had to rinse his hair and help him shave.

I'm a product of my western values, so I'm not being too hard on myself about this, but my life with Finian is teaching me to experience the world with a wider lens.

I took a deep breath and stayed with the discomfort of slowing down.  I remembered to be, instead of do.

In first nations cultures, our autistic loved ones embody mindfully living in their own time and space.  Seems to me that primitive cultures and disabled people are lightyears ahead of the rest of us in knowing their own souls.

Autism & Ironing

A few months ago I made the radical decision to stop ironing.

This might not be earth-shattering news to most, but in my little world it lines up comfortably with my evolution.

It started with a beautiful moment of clarity.

Finian needed a shirt.  I opened his wardrobe and directed him to chose one from the perfectly pressed row.

His shirts had all been washed, dried and then fretted over for a week as they languished in the ironing basket.

They accused me every time I opened the hot press.

"You're so disorganised" they seemed to say.

"You can't manage your workload"

"You're not a good enough mother/housekeeper/divine smoother of creases"

Crinkly clothes are remarkably talkative.

Those fuckers stressed me.

Finian grabbed a shirt, dropped it, walked on it, put it on his bed, sat on it, pulled it over his head, and splashed hot chocolate down the front.  He then found a microscopic rip in the hem, which he worried at til the garment became less-shirt and more-hole.  

He took the shirt off and deposited it in the bin.

My 'special needs' kid has more wisdom in his little finger that I have acquired in over 50 years of conditioned lunacy.

Ironing is a pointless waste of  precious time.  Spending hours rubbing hot metal over cotton, to erase creases that no-one cares about, is entirely insane.  

I'd much rather read a book and drink tea.

It's OK to be less than perfect.  It's OK to cast off the rules and conditions imposed on us by others.  It's OK to fuck insane shit in the bin.

Ironing now reposes peacefully in the trash beside Finian's shirt.

Autism & Failure

I am asleep.

Finian charges into my bedroom, leans down til our noses are touching and yells "DON'T WAKEN DADDY ZEBRA!!!!!"

I am less than amused.

Going back to sleep is an impossibility.

I plan to turn Daddy Zebra into a handbag and a funky pair of shoes.

Fuck Daddy Zebra.

We have tried hard not to allow Finian become the epicentre of our family.

We have failed so completely that I almost admire the magnitude of our failure.

We failed big.

We failed so big, we could have bridges and libraries built in it's name.

Our failure is so mountainous it could be spotted by bemused astronauts as a hulking mass of denial and rocky justifications.  Coincidentally at our house.

Failure Mountain.  You can't miss it.

It's HUGE.  Like, Kim Kardashian arse-huge.

I love nothing more than a little bit of light crucifixion to get the weekend going (I can't quite kill the catholic in me), but this is not an exercise in self-blaming.

It's calling it what it is.

When Finian was diagnosed at the age of 3, his sister Ellen was 7 and his brother Jimmy was 10.

I was advised by seasoned autism veterans to do everything possible to prevent our lives being consumed by autism.

I set about, with great energy and enthusiasm, doing the exact opposite.

Autism invaded and underscored everything.  Trying to resist autism is like trying to hold back the tide with your bare hands.  You get cold and tired, and drowning is inevitable.  Cheery, huh?

I failed Jimmy and Ellen by neglecting them, and I knew I was doing it while I was doing it.

I was devoured by a screaming, bolting, smearing, climbing, self-harming, insomniac dervish. At the same time, I was acutely aware I had two other children who were abruptly, and permanently, dispatched into a very distant second place.  I watched all this happen, powerless to change it.  Keeping one child alive trumped meeting the emotional needs of two others.  Knowing this cognitively does not make me feel better about it.

Sucks to be Jimmy and Ellen.

We talk about it, acknowledge their losses, and name the neurodivergent elephant in the room.

But with everything I've learned about attachment and trauma in my counselling degree, I know that they have been wounded.  Finian's siblings are the collateral damage of his autism.

Sucks for me that they'll choose my nursing home.

 

Autism & Second-hand Insomnia

Like many special needs parents, my sleep has become disordered because my son's sleep is disordered.

Kinda like second-hand insomnia, but without the 'pre-loved' label.

I've had 18 years of erratic nights, spiced with the extra added flavour of  anti-depressants, peri-menopause (which sadly is not a Japanese tempura) and mental health banana slices.

It's an interesting stew of wakeful psychobabble.

I got fed up of it, so I went back to basics using CBTi (cognitive behavioural therapy for insomnia) to clean up my filthy bedroom habits.

That was all very well.

I addressed my negative, spin-cycle worrying.

I (unenthusiastically) attended to exacerbating behaviours like having irregular bedtimes/wake times, drinking caffeine and alcohol, and cutting out day-time naps.

But at 4.30am this morning, I realised I had neglected to factor in the autistic elephant in the wakeful bedroom. 

I was jolted awake by my son blazing his phone torch into my left eyeball, with a lusty request for hot chocolate.

I manfully resisted dismembering the phone (and the son) into tiny, tiny pieces.  This was no mean feat, when I'd just been stabbed in the brain by Google laser beams.

He was dispatched back to his room (without hot chocolate). I realised that at no point does CBTi address the issue of being burned in the cerebrum by your kid in the witching hours.

Just sayin', CBTi.

Autism & Redirection

In many ways, I don't have my finger on the cultural pulse.

I've never seen an episode of the Kardashians.  I have no idea why Facebook is convulsing in a furtive, unsatisfactory orgasm over a Matthew Perry/Keanu Reeves bitch-scuffle.  I am more concerned about my obstinate nasal hair than some tedious Kanye-flavoured antisemitism.  

We're aggressively directed by social media to pay attention to crap better suited to an overflow sewer drain.   

Shit really ought to stay where it belongs.

If I believed in conspiracy theories, I'd wonder what fuckery the powers-that-be are distracting us from. I really don't want to spend my precious time on this earth sleep-walking through other people's lives.

Luckily for me I have the perfect antidote, wrapped in 6ft 3ins of irresistible autism.

Finian grounds me with unfailing consistency.  I meet him in a world populated by Enchantimals and flying ponies; there is no room in our universe for entitled starlets or manipulative media moguls.  

We just don't care about them.  

It's that simple.  The liberation from this is nothing short of wonderful.

Finian's autism, in some ways, is my saving grace.

I'm not blind to how hard autism is.  But I gladly accept the hard stuff when it comes with the gift of discernment.

We see, and love, the good stuff.  The goofy cartoons in Bulgarian, cuddles on a Sunday morning, a circle of precious people in my life I wouldn't have known without him, evenings at home with the fire lit, stormy walks in the forest.

If my face drifts towards the anaesthesia of social media, he quickly redirects me to earth.

What a gift.

Autism & Photos

Recently, we've had some really lovely remarks about a photo of James & I on a night out. 

It's always heartwarming to be told how well we look, and what a strong couple we are.

But something inside me kinda broke.

I love photos (which is why I enjoy Insta so much), but they conceal as much as they project.

I guess a photo is a two dimensional snapshot of a moment in time.  The smiles are genuine...... we were having a blast.  But it shows nothing of how hard is to keep moving forward with autism.

Maybe it's more comfortable for me (and for everyone else) to portray our lives as a succession of happy smiles on social media.  It would be quite something if I posted pics of autism in all it's unpretty reality.

Here's the truth of it;

We are not always strong, and we are not always well.

Much of the time we are sleep-deprived, cranky, overwrought, shut-down, exhausted, tearful, scared, lonely, grey-faced, hypervigilant, burnt-out.  

It would be easy to pathologize this as depression, but I'm familiar enough with that to know better.  Depression isn't a 'disease'.  It's an adaptive response to intensely difficult circumstances.

Also, a huge advantage of being a counsellor (and having had lots of therapy) is understanding authenticity.  Authenticity is owning our own reality, in all it's complexities, and responding to our loved ones from that place.  

Living with Autism has dragged me (mostly kicking and screaming) to this place.  It's not pretty, but it's real.  And I like the real me.

I'm not afraid of breaking.  Breaking is necessary to clear away the unhealthy parts that aren't working.  Paradoxically, breaking doesn't break you.

Being real may cost me friends, a clean house, status, a stellar career and that whole bag of jellybeans.  I'm getting used to that.  

But there's a funny joy in it all.  When you don't resist breaking, and become true to yourself, you lose all fear.  All of it. 

It's a strange, exhausting, soul-searching, deeply satisfying journey that autism is taking me on.

It really is a funny old life.

happy to be here

Autism & Cartoons

We watch a lot of cartoons in our house.

But when we live with an autistic young man, we watch them in our own unique way.

Tbh, I tune out of most of them.  There's only so much Humpf (in fucking Bulgarian) I can cope with before I start questioning the fabric of reality and frantically search for a void to scream into.

Yesterday, though, for a horrible half hour, I was forced to pay attention to them.

Well, when I say 'forced', the remote was out of my reach and I was too lazy to look for it.  I'd love to pretend I was caught up in the transcendental flow of my current crochet project, but really my arse and the sofa were locked in a deep and meaningful relationship.  They were in love.  Who was I to break that up?

I was so lazy that I voluntarily chose being tortured by The Enchantimals over moving my comfortably upholstered butt.

I can handle my own terrible truth.

Then I learned something.

I discovered that cartoons are subversive brainfuckery.  It might be less dangerous to employ Freddie Kruger to do a spot of babysitting.

Never mind the obvious violent, misogynistic racism of Tom & Jerry (those cheeky rascals).

Bob the Builder is a workaholic sycophant who only values his 'useful' team members.  

Ditto Thomas the Tank Engine.  Any deluded engine who imagines he will be loved for being himself, and not for the work he performs, can get right in the bin.

My Little Pony teaches us that if you're enough of a body-shaming brat, you get to become a princess.  Not a surgeon, or an artist, or a teacher.  Another (yawn) princess.

Peppa Pig has full-blown complex PTSD due to having a narcissistic father with delusions of grandeur, and a passive-aggressive mother who doesn't realise she's living in a houseful of pigs.  The sooner they're roasted and slapped between two slices of brioche, the better.

I miss the good old days of the Clangers, when sweet little moon mice visited the soup dragon to acquire some magic, green broth.  Or when Dougal worried about where to stash his 'sugar cubes' in the Magic Roundabout (while a bombed out Dylan sang folk tunes to the trees).

Absolutely no drug references there.

I recently discovered that Rainbow was absolute filth (sadly lost on six year old me).  And we won't even go there with Captain Pugwash.

Tbf, fairy tales and nursery rhymes are horrific, so terrifying our kids for the craic is nothing new.  

But cartoons are way more entertaining than I was aware of.  Once again, Finian has schooled me.

"get the green shit!"

Autism & Yoga

If Finian was a domestic appliance, he'd be a tumble dryer set permanently at warp speed.  His internal engines generate enough heat and speed to fire up a small nation.

It's a sad fact that we don't make optimal use of his exertions.  In a weird kind of inverse ratio, the more he bounces, the more worn out I become.  

I get tired watching him.

Mostly he directs his energy into pacing, making sure all the windows are closed, pacing, checking that there are no empty plug sockets, pacing, switching off all the lights, pacing, ensuring that various screens are projecting the required cartoons, pacing, making sure the dehumidifier is always fucking on, and more pacing.

The man likes to pace.

The last six months have been especially anxiety-provoking for him.  Movement is regulating for him, and lots of walks help to steer him between the ditches.  I don't want to shit all over walking, but if I see another lake, duck or forest trail I might eat my own legs.

So I started doing yoga with him.

It was one of those ideas so obvious that I can't believe I didn't think of it before.

I go to yoga classes as often as I can, and Finian did lots of it when he was at school, so we're both pretty familiar with it.

We set up a mat in the hallway, or just pause for a few beats wherever we are, and do 10 rounds of 'cactus arms' breathing.   I was expecting resistance from him, but he loves it.  In just a few minutes, his strung-out jets get cooled a little, while reinforcing an effective self-regulation skill.

It's great that you don't have to live on an ashram in Tamil Nadu, or be fit, or even be especially bendy to do yoga.  The kitchen floor is grand.

Try yoga, you crazy kids.  All the cool cats are doing it.

Autism & Cuddles

I'm a shameless hugger.

No-one is safe.

In public, I practice an exercise where I mentally pin my arms to my sides and count to ten until the urge passes.  

Then I hug them anyway.

I've had to had a stern word with myself to refrain from hugging the postman or the bank clerk (mainly to avoid injury or incarceration).

Usually this works.

The thing is, I miss cuddles with my adult children.

Yeah, we hug, and chill together on the sofa etc. etc. But we don't do the big, full-on, soul-deep cuddles we did when they were little.  When puberty arrives, cuddles like that become a bit creepy and Game of Thrones-y.

Finian, however, doesn't waste any mental energy on social norms or raised eyebrows.

Finian folds that flying fuck into an origami humming bird and catapults it far, far away.

This is one of the sunny sides of autism.

On weekend mornings he waits for his dad to get out of our bed (Freud, eat your heart out), dives in, and cuddles up beside me from his head to his toes.  With a big old silly megawatt smile radiating from his lovely face.  The man just wants a goddamn cuddle and isn't shy about getting it.  There's a purity about his demand for love that is both vulnerable and courageous.  His autism bypasses all the conditioned bullshit that prevents most of us from experiencing this.

Things can be right in the world with love like this

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